How I Feel About Tinnitus Subjectivity

[Jiri]

Tinnitus research is hugely underfunded and no one really cares until he or she gets it bad. I side with "the troll" here. I see him being proactive about it rather then just "ignoring it". This bitch tinnitus stole my life away from me. No dating, no socializing, living permanently on the edge. CBT & TRT are the only things we've got to fight it since 90's?

Some call it radical habituation. I hate it when doctors and other healthy people put this condition in the psychology drawer. "When tinnitus can rouse you from your sleep then you've got a real monster on your hands." Dr. McKenna

 

[Jazzer]

It also sucks that the community shoots itself in the foot everyday by borderline discouraging people from caring by selling them the poison that's the reason there's no treatments today (habituation). That's what sucks for me. I wouldn't care except I'm part of the tinnitus community and I don't want to be held back because we can't get it together.

I do not see 'the act of attempting to find the best coping methods for this wretched thing,' in any way as standing in the way of pushing for better research.

We all want an effective treatment.
We all want a cure.
We all suffer.
In the meantime, we all somehow have to survive day to day.
For that very reason we need to find the best coping methods that we can come up with.
That is not to imply an apathetic attitude to the push for much greater research.
Neither is it 'shooting ourselves in the foot.'

Incibentally, on the question of research, can I ask, how many of us 'put our money where our mouth is?
"How many of us actually donate to Tinnitus research, or donate to this website, come to that?"

I tend to have doubts, myself, about the whole 'habituation' aspect. Is it a fairy tale?
It's not a phrase that I tend to use much.
Does it exist? Is it even a possibility?
For very light "T" maybe.
It seems to be the Holy Grail of Tinnitus.


However, how does the act of sharing therapeutic approaches which may well help people to survive, contribute to,
".....being held back, because we can't get our act together?"
That's the bit I don't get.
There really is no need for a civil war, to me.

 

[threefirefour]

I do not see 'the act of attempting to find the best coping methods for this wretched thing,' in any way as standing in the way of pushing for better research.

We all want an effective treatment.
We all want a cure.
We all suffer.
In the meantime, we all somehow have to survive day to day.
For that very reason we need to find the best coping methods that we can come up with.
That is not to imply an apathetic attitude to the push for much greater research.
Neither is it 'shooting ourselves in the foot.'

Incibentally, on the question of research, can I ask, how many of us 'put our money where our mouth is?
"How many of us actually donate to Tinnitus research, or donate to this website, come to that?"

I tend to have doubts, myself, about the whole 'habituation' aspect. Is it a fairy tale?
It's not a phrase that I tend to use much.
Does it exist? Is it even a possibility?
For very light "T" maybe.
It seems to be the Holy Grail of Tinnitus.


However, how does the act of sharing therapeutic approaches which may well help people to survive, contribute to,
".....being held back, because we can't get our act together?"
That's the bit I don't get.
There really is no need for a civil war, to me.

How is it the holy grail of tinnitus? That would be a cure.

 

[Jazzer]

How is it the holy grail of tinnitus? That would be a cure.

An eagerly sought mythical object....

 

[Jazzer]

all about: compassion and support for one another.

Thank you Haz.
You - Me and Ed can be
'the Three Muskateers'

 

[Jiri]

"How many of us actually donate to Tinnitus research, or donate to this website, come to that?"

Even if this community donates some money to the actual ongoing research on tinnitus it's still going to be peanuts. Quite literally. The pharma companies need funding in $ten's of millions top dollar to make quite an impact.

 

[Zug]

@Jazzer, you are a breath of fresh air on here you really are. You are honest, and more importantly, you are compassionate. You show all the qualities of a brilliant human being. You are also a fine musician.

@Markku, again you are also incredible. You are suffering and yet you step up to the plate to make a visable difference to people's lives. You go beyond mere words and have actually created a community and a hub that actively participates in the tinnitus community at large. When I had my MRI incident I was in a real bad way. I'm not the best at showing my emotions neither on here, or in the real world. It is a weakness of mine. However, I have turned a corner on that and have accepted the new tone. I'm far from perfect, but I try to help others by sharing my experiences, good and bad.

Keep up the awesome work.

My personal thoughts are well known. I believe we should try and get our lives back on track, but should try and raise awareness - and possibly money - wherever possible. The primary focus should always be to get ones life back to a functional and happy state. It shouldn't really matter how this is achieved. The word habituation is almost taboo nowadays.

This is so important. I started dating, got back to work and went traveling when "habituation" didn't make any sense to me. I learned that even if subjectively you're not feeling 100%, that's not how the world sees you.

When I met my wife I told her to go away because I was useless and had loud Tinnitus and Hyperacusis. She told me that I was still very good company so she would stick around. Sometimes we need to move forward first and get the results latter.

 

[fran dana]

It's unbeatable. And due to the habituation stories there will never be a cure. If you have severe-intrusive tinnitus there's no possibility of habituation. I really dont understand why TRT supports such a claim. It's a one way ticket to hell. Indeed most of the patients have it mild and the bad cases are way less. Who would care to invest on research for such a thing? Fuck my life.

that is partially true. Let us suppose that researchers in the field of hearing loss find strong indications about the origin of tinnitus. they would give the incentive for others to invest in the development of a cure. the same happens in the field of genetics (stem cells), etc. the main motivation could be a side effect

 

[Samantha R]

@Markku
As always, your posts are well written and absolutely spot on.
I do want to say though that you should not feel inferior. I have found it very difficult to habituate to mild-ish tinnitus that I cannot hear all day.
I cannot imagine how I would be if that tinnitus became more severe.
I keep waiting for habituation, sometimes I feel like I'm on my way, other times the thought of the unknown drags me down like a lead weight.
Let's not stop doing what we can for a treatment or cure, however small. In the meantime we do have to try and get on with our lives, and habituation is the best way. This is not saying we shouldn't have a treatment or cure, but that we must do what everyone with a chronic condition must do - endure and try to stay positive.
Personally, I've been meeting with my local MP's, corresponding with our local tinnitus Associations to see what we can do to lift the profile of tinnitus in Australia. There is little if anything going on here, so much can be done.
I also donate to Hearing Health Foundation and the Tinnitus Research Institute.
Small things, but I feel like I'm doing something, no matter how small.